Search
Search
About
Log in
Join
Experiences with
RoActemra
Posts
Communities
733 public posts
Filter results
Reducing prednisone to zero
I have been on Prednisone for over two years. I am currently taking 1 and a half Mg. I believe the reason I have been able to reduce so low is due to the infusions of Actemra, which I started in October. For the last several months I had been reducing 1/2 mg of prednisone every three to four weeks.
I have been on Prednisone for over two years. I am currently taking 1 and a half Mg. I believe the reason I have been able to reduce so low is due to the infusions of Actemra, which I started in October. For the last several months I had been reducing 1/2 mg of prednisone every three to four weeks.
Plains
in
PMRGCAuk
1 year ago
First Biologic Drug Approved for PMR
Good news for those struggling to reduce Pred. The FDA approved a biologic drug, Kevzara, for PMR sufferes in the beginning of March. Ot acts like Actemra, which is only approved for GCA. At this point, it is approved in the United States. Hopefully other countries will follow. https://www.drugs.com
Good news for those struggling to reduce Pred. The FDA approved a biologic drug, Kevzara, for PMR sufferes in the beginning of March. Ot acts like Actemra, which is only approved for GCA. At this point, it is approved in the United States. Hopefully other countries will follow. https://www.drugs.com
Knit11
in
PMRGCAuk
1 year ago
Actemra
Does anyone know if Actemra should be stopped for a UTI...? I suspect I might have one....on my 17th injection today....still waiting for Doc to submit authorization for urine sample
Does anyone know if Actemra should be stopped for a UTI...? I suspect I might have one....on my 17th injection today....still waiting for Doc to submit authorization for urine sample
Joseph14612
in
PMRGCAuk
1 year ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
GCA and respiratory issues?
Hi everyone. I updated my profile to include my most recent flare/infection, but wanted to briefly share that info. with others who may experience respiratory issues with GCA. I had another bad "flare" that began on Feb. 4th at the end of a two week cruise. Again started with a sore throat, then respiratory
Hi everyone. I updated my profile to include my most recent flare/infection, but wanted to briefly share that info. with others who may experience respiratory issues with GCA. I had another bad "flare" that began on Feb. 4th at the end of a two week cruise. Again started with a sore throat, then respiratory
Preacherball
in
PMRGCAuk
1 year ago
Two weeks since start of flare & still in pain
Hi folks. I'd got down to 7mgs of Pred with the aid of Actemra (started 5 months ago). After 2 weeks on 7mgs, pains returned - same pattern & symptoms as first flare. ESR had jumped from 2 to 17 between December and February. Rheumy said to stick with the taper, pains could be something else. Three days
Hi folks. I'd got down to 7mgs of Pred with the aid of Actemra (started 5 months ago). After 2 weeks on 7mgs, pains returned - same pattern & symptoms as first flare. ESR had jumped from 2 to 17 between December and February. Rheumy said to stick with the taper, pains could be something else. Three days
strawclutching
in
PMRGCAuk
1 year ago
Adrenals are working!
I had a ACTH Stimulation Test this morning and just got the results back from my Endo. She said even better than she expected. So now I can start tapering off of hydrocortisone at 1/2 tablet weekly. Currently I am on two 5mg tablets in morning and Two 5mg tablets in evening. It seems a bit fast but
I had a ACTH Stimulation Test this morning and just got the results back from my Endo. She said even better than she expected. So now I can start tapering off of hydrocortisone at 1/2 tablet weekly. Currently I am on two 5mg tablets in morning and Two 5mg tablets in evening. It seems a bit fast but
pmac22
in
PMRGCAuk
1 year ago
Repatha
My cholesterol has more than doubled since having to take meds for an auto immune disease, GCA. I have taken a statin but must take low dose because of terrible muscle spasms that it causes. My cardiologist wants me to start taking a drug, Repatha, a biologic one injects every 14 days. I would like to
My cholesterol has more than doubled since having to take meds for an auto immune disease, GCA. I have taken a statin but must take low dose because of terrible muscle spasms that it causes. My cardiologist wants me to start taking a drug, Repatha, a biologic one injects every 14 days. I would like to
pmac22
in
Cholesterol Support
1 year ago
Possibly new on Actemra, what should I know?
Hi, I will likely be on Actemra in a week, providing OK tests. Sofar been on only pred in moderate dose (strated at 80 due to eye involvement and tapered down to 2 in about a year. Then up a bit to 5-10 but with unstable bloodmarkers, and now at 20 after a flare with eye involvement again) and a little
Hi, I will likely be on Actemra in a week, providing OK tests. Sofar been on only pred in moderate dose (strated at 80 due to eye involvement and tapered down to 2 in about a year. Then up a bit to 5-10 but with unstable bloodmarkers, and now at 20 after a flare with eye involvement again) and a little
Gilmor
in
PMRGCAuk
1 year ago
very high cholesterol
I had a visit with my cardiologist (my hero as she was the one to suspect GCA two years ago while dealing with uncontrollable blood pressure and head pain and eye issues) so she knows my whole GCA story. Anyways my cholesterol has gotten very out of control even with taking Crestor, my cholesterol levels
I had a visit with my cardiologist (my hero as she was the one to suspect GCA two years ago while dealing with uncontrollable blood pressure and head pain and eye issues) so she knows my whole GCA story. Anyways my cholesterol has gotten very out of control even with taking Crestor, my cholesterol levels
pmac22
in
PMRGCAuk
1 year ago
A flare after 4.5 months on Actemra
Hi again folks, Posted a couple of weeks ago while I waited for return call from Rheumy about ESR rising to 16/17 in February blood test from only 2 in December. Wasn't feeling much pain then, just really not myself and no energy. Next day after posting the back pains kicked in followed by pelvic &
Hi again folks, Posted a couple of weeks ago while I waited for return call from Rheumy about ESR rising to 16/17 in February blood test from only 2 in December. Wasn't feeling much pain then, just really not myself and no energy. Next day after posting the back pains kicked in followed by pelvic &
strawclutching
in
PMRGCAuk
1 year ago
Immunosuppressed on Actemra???
Does anyone know if being on Actemra puts you more or less at risk of covid complications? I had one doctor tell me I was actually safer on Actemra bc it is being used as a treatment for Covid. And, anyone know if Actemra affects our ability to mount an immune response to vaccines?
Does anyone know if being on Actemra puts you more or less at risk of covid complications? I had one doctor tell me I was actually safer on Actemra bc it is being used as a treatment for Covid. And, anyone know if Actemra affects our ability to mount an immune response to vaccines?
emmamom
in
PMRGCAuk
1 year ago
Quick question before my operation tomorrow
Shall I start with I think Brett and I are now pals and we have solved my issues with answering posts! I have have my parathyroid gland out tomorrow (benign tumour on it) that was flagged pre diagnosis with high calcium and shown up on nuclear scan. I have been all over the place re dose since Actemra
Shall I start with I think Brett and I are now pals and we have solved my issues with answering posts! I have have my parathyroid gland out tomorrow (benign tumour on it) that was flagged pre diagnosis with high calcium and shown up on nuclear scan. I have been all over the place re dose since Actemra
Sophiestree
in
PMRGCAuk
1 year ago
Reduction of prednisone and night pain
I have been slowly reducing my prednisone while doing Actemra. I reduced to 2 1/2 mg three days ago. I am experiencing shoulder and some hip pain while sleeping. Once I get up it is much better. Could this be happening because my body is getting used to the reduction in prednisone? I really don’t want
I have been slowly reducing my prednisone while doing Actemra. I reduced to 2 1/2 mg three days ago. I am experiencing shoulder and some hip pain while sleeping. Once I get up it is much better. Could this be happening because my body is getting used to the reduction in prednisone? I really don’t want
Plains
in
PMRGCAuk
1 year ago
Numbness in both feet
Numbness in both feet for the last 7 months....started prednisone about a year ago, Actemra weekly injection 13 weeks...are the numb feet due to prednisone or something else...glucose in the morning is about 100...taking glipzide for sugar, zedia and repatha for high cholesteral due to Actemra ...I have
Numbness in both feet for the last 7 months....started prednisone about a year ago, Actemra weekly injection 13 weeks...are the numb feet due to prednisone or something else...glucose in the morning is about 100...taking glipzide for sugar, zedia and repatha for high cholesteral due to Actemra ...I have
Joseph14612
in
PMRGCAuk
1 year ago
Lasix is a new friend
Hi. This is for those who have had issues with swollen ankles and calves.... My ankles have been huge since I first started feeling bad. Not much relieved the problem. In the morning they might be a smidge smaller but it was not a lot and did not last long. Enter PMR diagnosis and lots of prednisone
Hi. This is for those who have had issues with swollen ankles and calves.... My ankles have been huge since I first started feeling bad. Not much relieved the problem. In the morning they might be a smidge smaller but it was not a lot and did not last long. Enter PMR diagnosis and lots of prednisone
Wallysma
in
PMRGCAuk
1 year ago
Drug trial for GCA
Curious - I hadn’t heard of IL-17 and it’s role as treatment for GCA. I am currently on Actemra which is an IL-6 inhibitor. Luckily, it seems like there is an increased interest in finding solutions for GCA/PMR. Here is an article I recently came across. https://www.medscape.com/viewarticle/963473
Curious - I hadn’t heard of IL-17 and it’s role as treatment for GCA. I am currently on Actemra which is an IL-6 inhibitor. Luckily, it seems like there is an increased interest in finding solutions for GCA/PMR. Here is an article I recently came across. https://www.medscape.com/viewarticle/963473
Jumpe
in
PMRGCAuk
1 year ago
Stick where I am or increase?
Good morning folks! Haven't posted in a while, but would love a bit of advice. Been on Actemra for four months and have reduced Pred in that time from 9mgs to 7mgs using DSNS method. Rheumy wanted me to go 1mg a month but I'm trying to be cautious. Bloodwork every 6 weeks. Last month the GP receptionist
Good morning folks! Haven't posted in a while, but would love a bit of advice. Been on Actemra for four months and have reduced Pred in that time from 9mgs to 7mgs using DSNS method. Rheumy wanted me to go 1mg a month but I'm trying to be cautious. Bloodwork every 6 weeks. Last month the GP receptionist
strawclutching
in
PMRGCAuk
1 year ago
Worse after 2 years
I had the first symptoms of PMR in the spring of 2021, was diagnosed that fall and started on steroids in October, 15 mg. My symptoms improved, but never completely went away. It wasn’t pain, but rather extreme fatigue and legs and arms that felt heavy. I couldn’t squat and I couldn’t raise my arms
I had the first symptoms of PMR in the spring of 2021, was diagnosed that fall and started on steroids in October, 15 mg. My symptoms improved, but never completely went away. It wasn’t pain, but rather extreme fatigue and legs and arms that felt heavy. I couldn’t squat and I couldn’t raise my arms
Greytree
in
PMRGCAuk
1 year ago
Stopping Actemra
What happens if you decide to stop taking Actemra?? Do you have flares and them have to take more prednisone?? I have to have a hip replacement and my surgeon is worried about an infection as this could be really dangerous for me. He said they would wear moon suits in surgery but he is worried about
What happens if you decide to stop taking Actemra?? Do you have flares and them have to take more prednisone?? I have to have a hip replacement and my surgeon is worried about an infection as this could be really dangerous for me. He said they would wear moon suits in surgery but he is worried about
calicojoy41
in
PMRGCAuk
1 year ago
After 9 months of Pred...
OK... The chiropractor found something in my neck... not sure what, but he "cracked" my neck (adjusted) for lack of a better word...but the headache instantly went away...I go every week to see him...he wants me off pred too...anyway, I am at 20 mg now for 8 days...rheumy wanted me at 17.5 by now, but
OK... The chiropractor found something in my neck... not sure what, but he "cracked" my neck (adjusted) for lack of a better word...but the headache instantly went away...I go every week to see him...he wants me off pred too...anyway, I am at 20 mg now for 8 days...rheumy wanted me at 17.5 by now, but
Joseph14612
in
PMRGCAuk
1 year ago
1
...
6
7
8
...
37
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
PMRGCAuk
622 results
NRAS
83 results
Arthritis Action
5 results
View top 10 communities
Sort by
Most Relevant
Newest